Can you connect with me on the skype. My son with PMD. He is 9.5. He goes to fourth grade. We are from Ukraine. I would like to know how do the family live with PMD in USA. I have lernt an Ehglish for special it. If you have a free time I will be wait your answer to my emal my.science.mail.ru or my skype alina1998831. I have a husband too, and my daughter is 18 old year.
Hi Lisa - sorry for the delay in responding to your questions about the St. Louis race. You are correct - this race is not organized but PPMD but we will have a team that is running together! You can join the team by visiting our website. If you have any additional questions or need more info, email me at nicole@parentrpojectmd.org. I look forward to having you on the team!
Lisa could you tell me alittle about your journey with your sons dog. was it a long wait my Caleb is just starting to fall apart still walking but very hard its the I have no friends and he is so lonly doesnot want to go outside and does not like school we have little dogs but they only like each other and Caleb needs something that is his any info would be helpful thanks Penny
Hey Lisa, you might want to disable the Comment Wall on the Illinois/Missouri Families group. It's better if people are encouraged to start a discussion about that stuff in the group's discussion forum. You can do this under the "edit group" settings. Just thought I'd mention it.
hi lisa, did you mention at one time that dmd patient could fly free to see dr wong? i'd like to know how one could do that...if you have any knowledge please let me know at richagupta@yahoo.com.....
Hi Lisa,
I did leave a post on one of your groups. My name is Leigh and I am the partner of Andrew, whose son has DMD with a duplication of Exon 2. It is fantastic to read all of your posts.
Thank you
Leigh
At 12:51pm on February 12, 2010, Donna Gluck said…
Lisa,
I am happy to say I need only one more mom & son! I have an interview this Sunday afternoon.That leaves my searching for another (1) intrested mom. I am hoping all is well! How is your daughter? Donna
Hi Lisa! I'm sorry it's taken me so long to respond. I'm not too good about getting on here. I really should visit more often...this site is a great resource. We also have a golden retriever. Enjoy your new family member!
Lisa,
Thank you do very much for your support! I really do appreciate your help. Not sure where to turn to locate 4 additional perticipants. And, I am so close to finishing the research. Thought you moms out there could be the best help. Again, thank you.
Donna
Aren't Leslie and Alex just the most generous people. They truly are amazing. Tom, Wyatt and I stayed with them in Dec 2009 when we went to see Dr. Wong. They are wonderful hosts and their boys are darling.
Hi Lisa,
My pleasure! It's fun to get surprised.
I am still looking for moms + boys. Did you ay you may know of any? I am having difficulty in locating the last 3 boys that I need to complete my research. Can you think of any ideas?
Donna
Lisa,
Thank you for your kind words. I'm still seeking families. I need 4 more boys. It was great for you to help me! Please have Stephanie call or email anytime in the future should she need someone to talk to. She reminds me of myself at her age. You have a very nice family! Donna
Lisa,
It was such a pleasure to meet you, Bradley, and Jessica. You have wonderful kids that sure respect + love you. I could see it in their eyes! Thank you for allowing me to spend some time with you. Sincerely, Donna
Hi Lisa,
I will bring another form. Not a problem at all. We (my husband & I) are staying overnight in harrisburg tonight. I have your phone # if we should have any problems. I cannot think of any possibilities. My cell phone is 630-341-3839. If you need. Looking forward to meeting you and Bradley.
Hi Kim,
I just heard fromanother family. Can we meet Friday the 27TH or Fri. December 4TH? I want to meet with another family on the following Sat. They are in Carbondale. Donna
Lisa,
Yes, I can meet where it is convient for you. Just name the town and I can contact the library to see if they have a room available. WE would probably be looking at late afternoon friday or sat.during the day. May I have a coupleof options? Dates I mean,then I can start working on a meeting place. Thank you, Donna
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Can you connect with me on the skype. My son with PMD. He is 9.5. He goes to fourth grade. We are from Ukraine. I would like to know how do the family live with PMD in USA. I have lernt an Ehglish for special it. If you have a free time I will be wait your answer to my emal my.science.mail.ru or my skype alina1998831. I have a husband too, and my daughter is 18 old year.
StaffNicole Herring said…
Hi Lisa - sorry for the delay in responding to your questions about the St. Louis race. You are correct - this race is not organized but PPMD but we will have a team that is running together! You can join the team by visiting our website. If you have any additional questions or need more info, email me at nicole@parentrpojectmd.org. I look forward to having you on the team!
hi lisa, did you mention at one time that dmd patient could fly free to see dr wong? i'd like to know how one could do that...if you have any knowledge please let me know at richagupta@yahoo.com.....
thanks a lot and best wishes to you/family.
I did leave a post on one of your groups. My name is Leigh and I am the partner of Andrew, whose son has DMD with a duplication of Exon 2. It is fantastic to read all of your posts.
Thank you
Leigh
I am happy to say I need only one more mom & son! I have an interview this Sunday afternoon.That leaves my searching for another (1) intrested mom. I am hoping all is well! How is your daughter? Donna
Thank you do very much for your support! I really do appreciate your help. Not sure where to turn to locate 4 additional perticipants. And, I am so close to finishing the research. Thought you moms out there could be the best help. Again, thank you.
Donna
My pleasure! It's fun to get surprised.
I am still looking for moms + boys. Did you ay you may know of any? I am having difficulty in locating the last 3 boys that I need to complete my research. Can you think of any ideas?
Donna
Thank you for your kind words. I'm still seeking families. I need 4 more boys. It was great for you to help me! Please have Stephanie call or email anytime in the future should she need someone to talk to. She reminds me of myself at her age. You have a very nice family! Donna
It was such a pleasure to meet you, Bradley, and Jessica. You have wonderful kids that sure respect + love you. I could see it in their eyes! Thank you for allowing me to spend some time with you. Sincerely, Donna
I will bring another form. Not a problem at all. We (my husband & I) are staying overnight in harrisburg tonight. I have your phone # if we should have any problems. I cannot think of any possibilities. My cell phone is 630-341-3839. If you need. Looking forward to meeting you and Bradley.
I have a room at library reserved @ 1100 this sat. the 28TH. I am looking forward tomeeting you both!
Donna G
You can give them back to me when we meet. I have not been able to secure a room at the library yet. I will keep trying! Donna Gluck
I just heard fromanother family. Can we meet Friday the 27TH or Fri. December 4TH? I want to meet with another family on the following Sat. They are in Carbondale. Donna
Yes, I can meet where it is convient for you. Just name the town and I can contact the library to see if they have a room available. WE would probably be looking at late afternoon friday or sat.during the day. May I have a coupleof options? Dates I mean,then I can start working on a meeting place. Thank you, Donna
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